The Pediatric Epilepsy Surgery Alliance is dedicated to supporting families navigating the complex journey of pediatric epilepsy surgery. Founded with the mission to provide research, information, and community for families whose children have drug-resistant epilepsy and need some form of epilepsy surgery to treat their seizures, the Alliance offers several programs that address the critical needs of our community. Our Parent Support Navigator Program connects caregivers with others who have walked similar paths, offering emotional support and guidance. Our free course, Navigating the IEP Process, equips parents with the tools to advocate for their children’s educational needs. Additionally, we offer transition resources to help families prepare for life beyond surgery and Power Hours, where experts provide valuable insights on relevant topics. The Alliance also offers a travel scholarship to ease financial burdens for families seeking neurosurgical evaluations at distant medical centers. Through these efforts, the Pediatric Epilepsy Surgery Alliance empowers families with the knowledge and support they need, ensuring no family has to face this journey alone.
epilepsysurgeryalliance.org
September is National Suicide Prevention month and we’ve been working hard on a very special new collection… I hope it serves to remind many that the world is so much better with you in it.
We’ve been wading through grief with the recent loss of a beloved teacher in our community. Digging for hope and celebrating each new day.
One hundred percent of funds raised from the sales of the
The World is Better with You in it Collection will go to support our teacher’s young family + others in crisis via the 988 Lifeline, an organization providing access to free, quality one-on-one assistance. You deserve to be heard and cared about anytime, anywhere. Call, text, or chat 24/7/365.
Your story matters. Stay.
Luke passed away on August 7th, 2024 after complications from brain surgery. He was one of our brand ambassadors with the sweetest smile and a resilient soul. He bravely endured 13 surgeries in his short time here on earth.
Luke’s family has long-dreamed of creating Luke’s Lifeline - a foundation with the goal of helping kids like Luke get the durable medical equipment they need as well as funding inclusive playgrounds.
We’ll now be donating ten percent of sales to the Gast family to help get this foundation off the ground.
We know Luke will continue to change the world for years to come.🪽
To donate directly, please check out the GoFund Me created in honor of Luke:
“On August 7th, the Gast family suffered an unimaginable loss when their two year old son Luke, passed away after complications from brain surgery.
Luke and his twin brother, Jett, entered this world on October 29th, 2021 in Florida. At just 12 days old, Luke required his first of many helicopter life flights. He was diagnosed with a stroke in utero, a grade IV brain bleed and hydrocephalus that required a vp shunt. His biggest battles were epilepsy and cerebral palsy. The family relocated to Nebraska so Luke could receive the best care at numerous hospitals and medical clinics in town. Throughout the next two years, Luke bravely battled his way through 13 surgeries and countless hospital stays. He was never without the support of his amazing family and hundreds of friends.
Luke will be remembered for his beautiful smile and the joy he radiated to those around him. 100% of the funds raised will go towards starting a foundation to honor Luke, funeral costs and anything else the family needs.”
Karter was born on 6/26/16 via emergency C section after his mother, Tiffany experienced a spontaneous fetal maternal hemorrhage. Other than decreased fetal movement that day, there were no signs or symptoms that he was in distress. As a result of this rare type of bleed, Karter suffered a massive Hypoxic (lack of oxygen) Ischemic (loss of blood) Encephalopathy (affecting the brain) injury. This is otherwise known as an HIE injury.
After 4 days in the NICU, the team of doctors gave Karter's parents no other choice but to remove life support. They explained his brain injury was too severe to have any quality of life. They were told he would never be able to suck, swallow, breathe, see, hear, walk, or talk on his own. It was beyond devastating. On July 1, 2016 they removed life support, and braced themselves to say goodbye forever. To everyone's surprise, Karter survived 2 days in the NICU after life support was removed, so they sent them home on hospice. It was an excruciatingly painful and agonizing time.
Karter continued to fight for his life during the next weeks, and thanks to his parents decision to readmit him to the hospital, his life was saved. The first year of his life was a giant roller coaster, not knowing if Karter would live to see his first birthday. Learn more about Karter here.
The Kourageous Karter Foundation was born from the parenting journey that Tiffany and Kole have experienced with Karter. The foundation aims to make life better for medically complex kids and the people who love them. More than that, they strive to make the world more aware, inclusive, and accessible for kids like Karter. They do this in a variety of ways, including using their website as a platform for resource sharing and using their 501(c)3 public charity status to raise money for mission projects that benefit the disability community. Past projects have included: serving as a stakeholder for the design of a local inclusive playground, sponsoring family photos, advocacy work, purchasing adaptive toys, and providing scholarships for medical technology that helps kids with disabilities walk.
They are a very small, volunteer run, MN- based nonprofit that is just getting started. The focus of their work has been the Trexo Scholarship program, which launched in 2022. This medical technology is incredibly expensive and not always covered by insurance or medical assistance programs. This technology not only provides many health and mobility benefits, but serves as a platform/conversation starter on the importance of creating an inclusive/accessible world. Walking shouldn't be considered a "luxury" experience, and they are passionate about giving the experience of walking to as many kids as they can. To date, the foundation has been able to afford 2 Trexo scholarships. However, the awareness, hope, and sense of community that has come about as a result of these efforts goes much further than the number of recipients.
From Tiffany, Karter's mom:
"As a former special education professional turned stay-at-home-medical-mom, I have realized I have a unique perspective, experiences, and skill-set. There are so many gaps in the medical, educational, and state programs people like me rely upon to do this life. I want to put my skills and experiences to use, and create bridges to make it easier for families like ours. The only way I know how to accomplish this is to share what I’ve learned.
My hope is that sharing our journey will not only be therapeutic for myself, but can help others in the process. I am humbled and grateful you would take the time out of your life to learn from mine."
Learn more at Kourageous Karter Foundation
ten percent of every purchase at Little Rebels with a Cause goes to support this foundation.
Other Nonprofits We LOVE!
Spellers Freedom Foundation is a 501c3 charitable foundation whose mission is to provide every nonspeaker with access to communication via scholarships, school trainings, community building, and advocacy.
Donations directly help nonspeakers access communication and build the army of spellers making systemic change on behalf of themselves and others.
Spellers Ohana
Stepping into adulthood can be daunting for anyone.
As a nonspeaker, whose potential has been greatly overlooked, the road comes with some unique challenges. While you’ve been living under the care and support of your family, both you and your parents realize that having a life outside of home is not only needed, it’s necessary. Having a life of your own, getting a college education, and participating in meaningful employment are all parts of your incredible future that’s just waiting to unfold.
Welcome to your Ohana, a Hawaiian word for the family we choose, where no one gets left behind. Here we focus on the whole person, cultivating life-long opportunities for meaningful connection, self-directed autonomy, and purposeful contribution. We understand the unique challenges nonspeakers face because we are an organization created by and for nonspeakers themselves.
Learn more and donate directly at Spellers Freedom Foundation
Autism Society of Oregon (ASO)
At the Autism Society of Oregon, our mission is to create connections, empowering everyone in the Autism community with the resources to live fully. We are working to create a world where everyone is connected to the support they need, when they need it. We serve all ages throughout the entire state of Oregon, with no charge for our services and programs, and no membership fees. All donations are tax-deductible.
Learn More at Autism Society of Oregon
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Next Step Strategies, Inc. & WeBUILT
Next Step Strategies Inc is a non-profit organization whose mission is to support independent living for adults that experience disabilities. Next Step Strategies Inc was founded by Ann Wilkinson Ph.D., as she saw a need to create a service agency focused on utilizing positive behavior supports and person-centered planning. Empowering adults that experience disabilities to live at their highest level of independence.
As a nonprofit, we reinvest our resources in We Build Unique Independent Lives Together (WeBUILT) communities for growth and scalability. Ann’s journey with her own son, revealed gaps in available living opportunities for adults who experience disabilities. Ann knew that traditional housing and group homes were not going to work for everyone. There needed to be an alternative option that was going to provide natural supports to be successful in a community setting. Ann developed a setting for predictability and consistency through the WeBUILT community. Ann and Patrice Lester developed and executed building the first WeBUILT community in Clackamas, Oregon. An intentional community focused on independent living, where everyone’s house is personalized and fits their sensory needs. The thought process was if we can get each person’s house just right, then everything else would be easier. There are currently 26 residents that live at WeBUILT Clackamas. Our process is innovative and creative, going beyond traditional practices fostering an environment for independent living and new experiences.
Next Step Strategies Inc is primarily a word-of-mouth agency, with less than 2% turn over. We pride ourselves in providing 100% covered health, dental, and vision insurance for all full-time staff members, as well as opportunities for continued training.
We look forward to supporting this incredible organization with ten percent of every purchase through January 2023!
Learn more via video below and at nextstepstrategies.org
The More Than Project
The More Than Project was co-founded in 2021 by Kate Swenson and Amanda DeLuca. With both women being special needs mothers, they understood the stress, exhaustion, and struggle that comes with special needs caregiving and wanted to serve others with the support they wish they had years ago. As time went on, they recognized that supporting the caregiver was important, but they also wanted to explore avenues to support the special needs family unit as a whole. This inspired the More Than Project as the overseeing body for More Than a Caregiver, More Than a Sibling, and More Than a Teacher. Each of these programs provide support for caregivers in various forms, from reducing barriers to access mental health counseling, to providing sibling scholarships, to gifting teachers across the country with sensory equipment for their classrooms, and so much more.
We are so excited to send ten percent of every purchase made at Little Rebels with a Cause to this incredible nonprofit through the summer!
A Doll Like Me
We are beyond excited to introduce A Doll Like Me! Through spring, ten percent of every purchase at Little Rebels with a Cause will go to this wonderful organization.
A Doll Like Me was born out of the idea that our unique differences make us beautiful. At the very heart of this organization is the idea that children need to see themselves in the toys that they play with.
Dolls are important in play, growing imagination, and they help children make sense of their world. They can help children cope with stressful situations and, most importantly, they can help a child feel confident in who they are. Because of that, dolls should look like the children who love them!
Owner/Founder Amy Jandrisevits makes each unique doll by hand to look just like the beautiful child who will receive it. Her work is magical. She sees the beauty in all children and captures it in the sweet face of a doll.
Medical costs often mean "extras" are out of reach for families, so A Doll Like Me relies on donations to ensure that dolls remain free of charge for those receiving them. Visit ADollLikeMe.com to learn more or donate directly.
Oregon Adaptive Sports
Oregon Adaptive Sports (OAS) provides life-changing outdoor experiences for individuals with disabilities. OAS works to remove the barriers to the outdoors to empower athletes of all ages and abilities to gain confidence, resilience, and independence. OAS serves hundreds of individuals through 10 year-round outdoor sports including the Pacific Northwest's leading adaptive ski programs at Mt Bachelor and Hoodoo ski areas! OAS also offers all programs at low or no cost to athletes, which is only possible thanks to its generous donors and sponsors!
For more information or to donate directly: oregonadaptivesports.org
NW Disability Support
NW Disability Support has two programs, All Born (in) (ABI) and Northwest Down Syndrome Association (NWDSA).
ABI is cross-disability work with a mission in pursuit of an inclusive civil society. They empower and support families and individuals whose lives have been touched by developmental disability. They work to increase education, promote public understanding and acceptance, advocate for full inclusion, and defend the civil rights of individuals with disabilities. Their values are the core of the organization and the basis for how they make decisions to support their mission.
NWDSA's mission is to create and nurture a loving and inclusive community celebrating every person with a disability, including Down syndrome.
For more information or to donate directly: nwdisabilitysupport.org
